Author Archives: Ostiguy

Incredible interview with Bruce Kramer about “living with ALS”

I highly recommend this interview with Bruce Kramer to you.  Professor Kramer, a retired musician and college Dean, offers profound insights into living with disability, relationships with helpers, and the potential for disability (or impairment) to be a great teacher.  As disability studies scholars and disability rights activists help to challenge the idea that disability is inherently tragic, diagnoses like ALS continue to elicit visceral responses of sadness, repulsion, and pity from society.  Professor Kramer’s story serves as a reminder that these disabilities can deepen one’s connection with humanity, enrich one’s experience of life by enhancing the capacity for joy.

“I will admit to you, there are days where I just melt down.  I’ve had it.  I don’t like having everything done for me.  But the fact is, that most of the time I perceive great beauty, and great joy.  And, a lot of that comes from having ALS.”  ~ Bruce Kramer

Facing Alzheimer’s Disease with Grace and Humor

Just saw this trailer for a Glen Campbell documentary.  Campbell stands out in my memory for his song, Rhinestone Cowboy; and I respect his ability as a guitarist, but I really do not know that much about him.  However, I am interested in watching his film.  From the brief clip, I am very impressed with his bravery, grace, and humor while facing an unenviable experience with Alzheimer’s Disease.  Rather than wallow in self-pity and hide away, Campbell decided to step into the spotlight and be bold.  I truly admire that.  How many of us shrink away from the things that make us feel less than perfect?  Maybe Campbell should serve as an inspiration to us all to live our lives unapologetically and authentically.

Daughter’s Nature’s Classroom Experience

This past week, I had the privilege of being a chaperone for my daughter’s week-long Nature’s Classroom experience.  This involved me staying in a cabin the boys at night and helping to monitor all the kids during the day.  The experience was wonderful, and I was so impressed with all the kids.  One of my most distinct takeaways was the ways that children with developmental disabilities were included in the experience.  I was not informed of anyone’s specific disability diagnosis, but some clearly carry diagnoses on the autism spectrum.  Thinking back to my elementary school experiences, I am pretty sure that many students with disabilities would have been discouraged from staying overnight, or from participating at all, but my daughter’s school is emblematic of the present state of disability inclusion in K-12 education. The children were provided with overnight 1:1 aides, and Nature’s Classroom instructors were proactively informed of necessary modifications and/or accommodations required for full participation.  In this manner, the children took part in a variety of activities including primitive fire building skills, night hikes, sing-alongs, science experiments, natural arts, and the identification of animals in the wild.  While there were some challenges, the overall experience was very impressive.

From my perspective, I was also impressed with the ways the children interacted with each other.  Children with disabilities were involved in all aspects of unstructured play, from tether ball, to soccer, to four-square, to typical horseplay.  Each morning and evening, kids were sent for their medications, and nobody blinked an eye.  There was no apparent stigma for requiring medication or needing accommodations.  Perhaps it shouldn’t be remarkable, since this is how we want human interaction to occur, but as a higher education professional, I was very impressed with the behaviors of these children, and it makes me feel hopeful about the future.  Anyway, this is just a quick note based upon my observations.  It makes me think about the work we do at Disability Services, and how we sometimes need to educate instructors or program coordinators to promote the full inclusion of students with disabilities.  I look forward to a future when disability inclusion is an unquestioned norm, heralded by the remarkable generation of children I witnessed last week.

Re-appropriating Stigmatizing Language

The re-appropriation of pejorative terms is not uncommon, but the practice can cause discomfort in some people.  For example, people who fought to dismantle disability stigma and oppression may recoil at the use of terms such as “freak” and “crip” among some disability sub-populations.  However, the reclaiming of these historically hurtful words can be an act of liberation for the one doing the re-appropriating.

I recently had a conversation with a colleague who expressed dismay about a television program that depicts people with disabilities as “freaks.”  For me too, it feels inherently wrong to exploit people with disabilities as “freaks” for profit… or for any reason.  However, I recently came across this interview with Mat Fraser who portrays “Paul the Illustrated Seal” on American Horror Story: Freak Show.  Mr. Fraser speaks clearly and convincingly about the power and beauty of re-appropriation, and the way he engages his life eschews the notion of people with disabilities as either heroes or tragic figures.  He appears to live his life unapologetically, doing the things that bring him joy, while embracing his full being.

I am not espousing a particular view here, but it seems clear to me that Mr. Fraser is not limited by words or external expectations, and I find that wonderful.  What do you think?

Disability in the Workplace

Although Disability Services is primarily known for supporting academic and social inclusion for students, we are also the department responsible for the provision of workplace accommodations for University faculty and staff.  Even in an inclusive and committed environment such as UMass-Amherst, disability in the workplace can be difficulty to navigate.  Across the nation, people with disabilities are underemployed and under-earning, prompting awareness campaigns from the highest levels of government.  At Disability Services, we employ a number of staff and students with diverse disabilities, and we advocate for greater inclusion across the campus.  With ten years of experience providing workplace accommodations, I believe increased awareness is a big part of the solution.  When employers begin to realize how much untapped talent is available in peoples with disabilities, and when they understand that workplace accommodations frequently are simple and cost very little (or nothing), they begin to transform the employment landscape for people with disabilities.

However, a big part of this process involves people with disabilities applying for jobs!  Considering this, I want to encourage folks to apply for jobs–even the ones that seem slightly outside the realm of possibility.  I do not think that people with disabilities are responsible for educating employers, but everyone owes it to themselves to not sell themselves short.  For every person who thinks a door is shut to them, there is another person with a similar challenge who already found their way to the other side.  If you are struggling with doubt, visit UMass Career Services, talk with Disability Services staff, and be sure to speak with your academic adviser and/or faculty.  You can do it!

Disability & Climate Change

Yesterday, my 10-year old daughter, Emma, and I went to New York City to participate in the People’s Climate Change March.  It was a long day, waking at 5:00 AM, traveling by bus, marching around NYC for almost seven hours, and then arriving home by bus at 11:30 PM.  However, it was a deeply moving and meaningful experience for me to share with my eldest daughter.  Estimates of the number of participants are as high as 400 thousand, and I am glad that we are counted among them.

One of the major take-aways from the experience is the diversity of the protesters.  There was so much cultural, racial, gender, linguistic, national, age, economic, and ability diversity to behold.  In particular, I took note of the number of people who use wheelchairs and with mobility challenges peppered within the throngs of protesters.  The press does not often discuss the connection between disability and climate change, but I think it is an important consideration for public policy.  Some of the most vulnerable people in New Orleans during Katrina were people with disabilities who were cut off from medicine, electricity, health care, clean water, and personal care assistants.  Here at UMass we are speaking with students with disabilities about emergency preparedness as tornadoes and other extreme weather pose increasing threats in the Pioneer Valley.  Of course, the campus is taking precautions to be ready to respond and help during a crisis, but each individual needs to take measures to prepare for their own unique requirements.  If we all do our part, we can weather great storms with the least amount of discomfort and threat possible.

 

Disability Activism: 36 Arrested

It often takes acts of civil disobedience and public spectacle to promote social change.  Indeed, the legislative rights we enjoy today are the direct result of the public protest and advocacy of generations past.   For example, the Capitol Crawl (link to History by Zim website) forced legislators to recognize the differential experiences of people with disabilities, inspiring support for the Americans with Disabilities Act of 1990.

However, the fight for disability rights is not over.  Just today I came across news of 36 disability activists arrested in Arkansas.  It made me think of how far we have come, and how far we have yet to go.  It also makes me think of my role as a disability advocate at UMass, and what changes I could be championing, but am not.  As an administrator, I have a specified role to play, in a particular bureaucratic context… and this is why activists are still needed.  Activism is the spark that causes bureaucracies to change.  However, activism seems to be increasingly difficult.  Laws and codes are passed to restrict the time and place of protest, effectively insulating the decision makers from the voices of the aggrieved.  For this reason, I find it heartening to read the news of these courageous protesters.

 

Ben’s Disability Blog 2.0

Following my promotion to Associate Director of Operations in 2009, I virtually stopped posting to this blog.  I was learning my new role and I suppose I felt my energies were better applied to the day-to-day functions of my work.  Now, several years later, I am feeling the itch to write again, and I am realizing that my audience is a lot more broad than it had been!  Instead of a couple hundred students on my caseload, I now have the opportunity to share useful information (and some self-indulgent ramblings) with over 1,300 UMass undergraduates, graduate students, and employees (i.e., staff and faculty).  With this new-found purpose, I am going to resume my blogging practice and hope to post updates on a regular basis.

To guide my efforts, I welcome you to send me suggestions for postings!  For instance, is there an accommodation you would like to me discuss in detail?  Are you a professor who would like some clarification about your role in the accommodation process?  Are you a supervisor of someone with a disability and unsure about how to sort out performance concerns from elements that may actually require accommodation?  Do not feel limited by my examples, if you have questions or topics to share with me, please send them along!  I will do my best to address them privately and then post a general response for the general public here on my blog.

I can be reached at ostiguy@admin.umass.edu.  Cheers!

Disability and Identity

A student recently told me that she is a “mess.”  She has a diagnosis of ADHD and indeed, she exhibits many of the classic symptoms: disorganized, lacking follow through, strong social skills, creative, etc.  Listening to her speak I was truck by her burden.  The sum of her comments clearly communicated her dislike for herself, as if having a disability makes her inadequate and in need of change.  It appears to be a virtual truth in contemporary America that no one is adequate just as they are.  We’re all “too” something and “not enough” something else.  When it comes to disability, it often means that one is essentially “not normal.”  My student was sitting across from me, vulnerable and asking for my help, hoping I will be able to make her more normal.

Obviously, I cannot change someone, and the student is intelligent and aware of this reality too.  It seems to me that the transformation that is required needs to come from within.  In my opinion, a balance needs to be found between accepting reality while rejecting the notion of fate.  The reality is that this student is struggling at this moment, but she is not fated to this sort of experience throughout her life.  By exploring appropriate medications and therapies, eating right and getting rest, choosing courses (and later, careers) that play to her strengths, requesting and using reasonable accommodations, and approaching her disability challenges as opportunities to innovate and grow, this student can integrate her disability into her identity as an individual and not allow herself to be *defined* by a diagnosis.